WEGO HAWMC

day2

 

The WEGO HAWMC is quite a mouthful! WEGO Health describes itself as “social media’s most active online health community — Health Activists. These influencers, organizers, connectors, leaders and contributors are passionate about helping others lead healthier lives.” WEGO Health Activists have thrown out a challenge: the HAWMC, or Health Activist Writer’s Month Challenge. It’s a post-a-day challenge taken on by several bloggers I greatly admire. One of them asked if I was planning to participate, so here we are.

I missed Day 1, so will start with Day 2, which is pretty scrambled logic for this Type-A girl, but part of the challenge is thinking — and blogging — outside of our comfort zones so I guess I’m in.

Today’s prompt:

Introduce your condition to other Health Activists. What are 5 things you want them to know about your condition/activism?
Yikes. I hate to think of breast cancer as “a condition” but I suppose it is. I certainly don’t think of myself as an activist, but for these purposes I’ll assume I am.
Ok, so introducing y’all to breast cancer. Y’all, this is breast cancer. Breast cancer, this is y’all.
It’s safe to say that everyone knows about breast cancer, thanks to the pink-ribbon brigade, so on to the 5 things you need to know about breast cancer. Those who have it already know. Those who care for/care about someone who has it already know, too.
#1 — “Early detection is key.” Yes, and no. Early detection is important in that it can prevent breast cancer from spreading and progressing to a more complicated prognosis and a less favorable outcome. But it also leads to overtreatment and contributes to our skyrocketing health-care costs.
#2 — “Breast cancer is a “good” cancer. This is rather loaded. Yes, it is “good” in the sense that it occurs in a body part that is nonessential to sustaining life, and in a body part that can be removed, ostensibly also removing the cancer. But let’s face it, no cancer is a good cancer. And while have a lumpectomy or mastectomy is perhaps easier than removing a lung or other vital organ, the aftereffects for women are brutal, both physically and emotionally.
#3 — “Taking Tamoxifen every day for 5 years is a pretty easy way to manage the disease.” Tamoxifen is rough. Its side-effects are numerous, and even if a women suffers just one or two of those side-effects, they’re quite disruptive. And quite sucky. For those of us diagnosed before menopause, Tamoxifen fast-forwards us to the land of hot flashes, night sweats, mood swings, and other lovely challenges. Within days of starting my Tamoxifen, brown spots appeared on my face. My skin grew noticeably thinner while my body tried to grow fatter. My anxiety level soared while my endorphins crashed.   Having to remember to take my little white pill every day stresses me out: taking it ensures these awful side-effects, but stopping it puts me at risk of recurrence. What part of this is easy??
#4 — “Your breasts don’t define you.” True. Very true. This is true for all women, whether they have breast cancer or not. Huge strides have been made in women’s rights and it’s a wonderful thing that society “allows” us to be more than window dressing. But pick up any magazine and look at the ads or watch any random commercial or walk through any suburban grocery store and notice the boobs. They’re everywhere. And they’re big, round, and perky. If we aren’t defined by our boobs, then why is losing them so traumatic? If we aren’t defined by our boobs, then why do more than 300,000 women a year in the United States undergo elective, cosmetic surgery to enhance their breasts?
# 5 — “Being diagnosed with cancer makes you stronger.” Perhaps in some ways it does. I am no longer afraid of needles after the bazillion shots and injections I’ve received, and can now give myself a shot if need be. I barely flinch when the phlebotomist pierces my skin with a wide-bore needle to extract a blood sample. I know that I can endure an awful lot — physically and mentally. But did I need to be diagnosed to become stronger? Doubtful. And that newly gained strength is a pittance compared to the things that cancer costs me — physically, mentally, and financially.

 


Blog Party, APA style

The American Psychological Association knows how to throw a party. Well, a blog party anyway. The APA is sponsoring a Mental Health Blog Party today, and I’m happy to participate. Many thanks to Marie at JBBC for spreading the word about the MHBP. If I didn’t know better, I might think it’s an acronym party, as well.

The topic of mental health is scary, uncomfortable, and unpleasant for a lot of people. Add cancer to the discomfort of mental health and watch people run screaming from the room or back away slowly, never breaking eye contact. Perhaps that’s part of why the APA is throwing the Mental Health Blog Party; to de-stigmatize mental health issues the way pioneers such as former First Lady Betty Ford and Dr Susan Love have taken the shame out of breast cancer.

Yesterday I got a call from the nurse case manager provided to me by our health insurance company. We’ve had this particular health insurance, United Health Care, since September, but the NCM just got around to calling me. When I was first diagnosed, and under another insurance company, the NCM was fantastic. She was a great resource not only for insurance issues but also knew the medical side of my problem too. She went to bat for me and got the insurance company to pay for my Oncotype DX test, which costs a fortune but is instrumental in making a decision about treatment options.

Anyhoo, I was surprised to get a call from the United Health Care NCM out of the blue yesterday. I suppose she — or someone in her group — just noticed my unusually thick file, chock full of cancer calamities and infection ills and figured I warranted a phone.

We went through the usual laundry list of details: date of diagnosis, surgeries (yes, plural surgeries), and treatment status. Then there was the recitation of the everyday meds post-cancer: tamoxifen to prevent recurrence, Effexor for menopause symptoms, levothyroxine for sluggish thyroid, and Ambien to help my worried mind shut down and get some sleep. Oh, and don’t forget the glucosamine for my rotten joints (thanks, tamoxifen!), Ferrex iron boost for anemia (thanks, mycobacterium!), and calcium for osteopenia (thanks, menopause!). I’ve recently added an Omega fatty acids supplement too to help jump-start my addled brain (thanks, PTSD).

Although I clearly stated that the Effexor is to help manage the hot flashes, night sweats, and moodiness of menopause, the NCM asked me if it’s helping me manage the depression brought on by my cancer diagnosis.

I reiterated that I’m not taking it for depression but to get some much-needed relief from the atrocities of chemically induced menopause. I don’t think she believed one word I said. Either that or she’s hard of hearing because she again asked how I’m coping with the depression and reminded me that it’s ok and even expected to feel sad after being faced with cancer.

I finally told her in an exasperated voice that I don’t suffer from depression, and if I did, I’d have no qualms whatsoever about taking an antidepressant. To me, depression is no different from any other medical condition that requires daily medication. Where’s the stigma surrounding statins for high cholesterol? Or beta blockers for high blood pressure? Or insulin for diabetes? Why should the stigma just be attached to depression? That sweet woman got more than an earful from me. I still think she doesn’t believe me about the depression thing, and she ended our phone call by reminding me that my health insurance plan covers 8 free counseling sessions. Just in case I need some help with that depression.

I understand completely why cancer patients and cancer survivors may be prone to depression. The list is long, very long, of reasons for cancer patients and survivors to be depressed, sad, out of sorts, unmotivated, fatigued, unable to concentrate, easily confused, guilty, hopeless, worried, unable to sleep and full of chronic aches & pains.

Webmd has an entire online community devoted to cancer. From the web site:

“Depression is a comorbid disabling syndrome that affects approximately 15% to 25% of cancer patients. Depression is believed to affect men and women with cancer equally, and gender-related differences in prevalence and severity have not been adequately evaluated. Individuals and families who face a diagnosis of cancer will experience varying levels of stress and emotional upset. Depression in patients with cancer not only affects the patients themselves but also has a major negative impact on their families. A survey in England of women with breast cancer showed that among several factors, depression was the strongest predictor of emotional and behavioral problems in their children. Fear of death, disruption of life plans, changes in body image and self-esteem, changes in social role and lifestyle, and financial and legal concerns are significant issues in the life of any person with cancer, yet serious depression or anxiety is not experienced by everyone who is diagnosed with cancer.”

While webmd quotes 15 percent to 25 percent of cancer patients suffering from depression, and the Lancet says it’s more like 16 percent, who knows if either number is anywhere near correct because so many people are ashamed to admit to depression. The fact that more cancer patients and cancer survivors aren’t depressed is what surprises me.
New York Times columnist Dana Jennings blogs about his bout with advanced prostate cancer, and speaks of being “ambushed by depression” after enduring the grueling treatments and being back on the road to good health. He quotes the 25 percent as well, and compares that to 7 percent of the general population suffering from depression. He refers to it as less about sadness and more about feeling oppressed “as if I were trapped, wrapped up in some thick fog coming in off the North Atlantic.” Jennings goes on to admit that writing about prostate cancer and all its embarrassing aftereffects is easier than admitting he’s depressed.

“It’s harder to write about the weight of depression than it is to write about prostate cancer and its physical indignities. Cancer is clear biological bad luck. But depression, no matter how much we know about it, makes part of me feel as if it’s somehow my fault, that I’m guilty of something that I can’t quite articulate.”

That is staggering.
Because Jennings is a professional writer, he conveys much more eloquently than I the impact of depression after cancer. I’ll close with this, and will ponder his words as I attend the APA’s Mental Health Blog Party.

“Partly, I think, I’m grieving for the person I was before I learned I had cancer. Mortality is no longer abstract, and a certain innocence has been lost. And while the physical trauma is past, the stress lingers and brings with it days washed in fine shades of gray. In the same way that radiation has a half-life, stress does, too. We all ache to be the heroes of our own tales, right? Well, I’m not feeling too heroic these days. Cancer pushes lots of difficult buttons. It lays bare our basic vulnerability and underlines the uncertainty of this life. And prostate cancer attacks our culture’s ideal of manhood. The steely-eyed Marlboro Man isn’t expected to worry about incontinence and erectile dysfunction. Cancer feels bleaker than other diseases. Even though my health keeps improving, and there’s a good chance that I’m cancer free, I still feel stalked, as if the cancer were perched on my shoulder like some unrepentant imp.”


Becoming Benjamin Button

I haven’t seen that movie, but I feel Benjamin’s pain with premature aging. I don’t recall anyone telling me in the early days of this cancer “journey” that being thrown into menopause a decade earlier than normal would be such a bear. In fact, I don’t recall hearing anything at all about being thrown into early menopause. Yet another lovely bit of fallout from a cancer diagnosis, for sure (insert a boatload of sarcasm here).

Menopause is a bitch on any level. It’s certainly not a contest, and some women have it way worse than others. I’m thinking of one darling friend in particular who’s been dealing with the ‘pause for 10 years. Yuk. It just sucks, and I’m because I’m officially old and crotchety, I’m not in the mood to look on the bright side or try to find something positive about this shitty situation. Correction: I just found something positive — it gives me an excuse to use the word shitty, one of my faves in the cursing arsenal.

I first came face-to-face with chemically-induced menopause two summers ago when my favorite oncologist recommended hormone suppression since my breast cancer was fueled by estrogen. Get rid of the food supply, starve the cancer; makes perfect sense. Suppressing the estrogen for me was achieved by the dynamic duo of Tamoxifen and Lupron. For the lucky uninitiated, Tamoxifen is a pill-form of chemo that we members of the pink ribbon club take every single day for 5 years, minimum. The Lupron is delivered once every three months via a gigantic needle that left me bruised for weeks.

Enduring the injection was a piece of cake, though, compared to the side effects of Lupron: constipation, joint pain, bone pain, general body pain, dizziness, hot flashes, fatigue, stuffy nose, nausea, sweating, insomnia, weakness.

Great.

Add that to the side effects of Tamoxifen–bone pain, hot flashes, loss of balance or coordination, persistent fatigue or weakness, among the highlights–and you’ve got a hot mess.

No wonder I feel bad.

Then I look in the mirror and I feel even worse.

Side effects of menopause are just as fun as the drugs’ side effects: hot flashes, osteoporosis, hot flashes, mood swings, hot flashes, changes in your female gear, hot flashes, mood changes, hot flashes, change in vision, fatigue, hot flashes, night sweats, hot flashes, joint pain, hot flashes.

Did I mention the hot flashes?

The combination of the drugs’ side effects and general menopause side effects are mind-boggling.

The unsung side effects from all this mess are mostly vanity-related but no less troubling. A thinning of the hair on one’s head accompanied by a growth spurt in the hair on one’s face. Decreased collagen in the skin. Dry skin. Dark circles under the eyes. Brittle nails. Wrinkles. More wrinkles. Changes in hair color and texture.

Any part of this would be unpleasant enough when dealing with it at the “normal” time, whatever the hell normal is anymore. Going through the ‘pause with girlfriends could be fun: let’s stay up all night, sweating and hot-flashing, while watching our moustaches grow. Sure, we’ll be extra tired and grumpy the next day, but hey — we’d be tired and grumpy anyway, right? If I’m going to become an old bitty before my very eyes, I want to do it with my BFFs.

But wait, I’m on an accelerated schedule. I’ve got the Fast Pass to menopausal hell, while the women in my peer group are still relishing their early 40s. Botox is for fun, not necessity, and plucking billy goat chin hairs is reserved for grannies. 40 is the new 20, right? Except for me; 40 is the new 60. I am the granny in this scenario. I’m feeling more kinship with Betty White than with J-Lo.

To quote Sheryl Crow, “No one said it would be easy. But no one said it’d be this hard.”

 


Tamoxifen and kids

Did y’all hear about this? A Trenton, New Jersey CVS pharmacy accidentally dispensed tamoxifenn instead of pediatric fluoride pills.

abcnews.com

Yikes.

I love CVS for the generous donations they made to Extreme Home Makeover, the feel-good show that used to be on TV. I searched to find a source to tell me how much CVS donated via the show over the years, but my patience wore off before I could find an answer. Suffice to say it’s a lot.

When I read about the drug mix-up, I cringed. The estimate is that as many as 50 kids received Tamoxifen instead of their chewable fluoride pills between December 2010 and February of this year. CVS hopes that any one of those 50 kids who tried to chew a tamoxifen pill instead of the usual fluoride pill would notice that something was different. Daniel Hussar, who teaches at the Philadelphia College of Pharmacy, was quoted as saying that because tamoxifen is meant to be swallowed, no effort is made to make it taste good, as is the case with chewable fluoride. He says a child who tried to chew tamoxifen would likely “want to spit it out or tell his parents it tastes bad.”

If they didn’t notice the taste, I wonder if they noticed the side effects. I pity the parent who has to deal with a moody, hot-flashing kid.

Because tamoxifen’s job is to block estrogen and prevent breast-cancer recurrences, it can monkey with one’s hormones. I’ve written about this very topic. More than once. I feel pretty qualified to complain about the side effects of tamoxifen, even though I know it’s an integral player in the recurrence-prevention game. I know well that this drug is my best shot for keeping that infernal cancer beast from showing its ugly mug around here again. The National Cancer Institute says explains it, “As adjuvant therapy (treatment given after the primary treatment to increase the chances of a cure), tamoxifen helps prevent the original breast cancer from returning and also helps prevent the development of new cancers in the other breast. As treatment for metastatic breast cancer, the drug slows or stops the growth of cancer cells that are present in the body.” Great right? Yes. Definitely. But, as we all know, there is no free lunch, and tamoxifen comes with some heavy side effects.

At the risk of sounding like one of those annoying commercials that lists every side effect under the sun, here goes:  increased chance of blood clots, increased risk of strokes, development of uterine cancer, and cataracts. But wait, there’s more: menopause-like symptoms such as mood swings, hot flashes, joint pain, and leg cramps. Not listed is the accelerated aging characterized by dry skin, loss of collagen, brown spots (aka “age spots”), and thinning hair. Because losing my rack isn’t enough, I also got thrown into chemically-induced menopause and became a brittle old woman decades before my time.

Not that I’m complaining.

Instead, I’m looking on the bright side: when I pop the little white pill every morning, I know exactly what I’m getting. No surprises. No mistaking a chewable fluoride pill for a powerful anti-cancer weapon.

 


Jane, get me off this crazy thing!

Remember George Jetson? And his ill-fated stint on the treadmill? And him begging his too-cute-for-him wife to get him off the crazy thing? I know how George feels. I’ve never been a fan of the treadmill in general, much preferring to get my cardio fix outside or slog my miles on the elliptical, but this figurative treadmill I’m on now is the pits. Stop the ride, I want off.

I mentioned that I have a heavy issue on my mind and wasn’t sure what to do about it. Yesterday was intended for settling the issue and making the necessary plans to move forward. Instead, it was a craptastic example how nothing goes as planned or as expected on this damned cancer “journey.” Having just come off a week of antibiotic hell after my latest reconstruction revision, craptastic was the last thing I needed. And yet, in typical cancer “journey” fashion, it’s got to be as complicated as humanly possible.

Yesterday started with a trip to the dermatologist for ye annual mole check, and that visit ended with 2 shaved-off moles being sent off for biopsy and the unceremonial removal of 7 or 8 skin tags. Being a melanoma victim, I’m pretty serious about any weird-looking spots on my skin and don’t hesitate to point out ones that need to be lopped off. Like the Queen of Hearts from Alice in Wonderland, I say “Off with their heads.” I was a walking Band-Aid when she got done with me. Then I headed straight to my next appointment, stop #2 of 3 on the Monday doctors’ tour, which should have been a simple fact-finding trip but ended up being an exercise in frustration and confusion.

Here’s the deal: when I was first diagnosed, way back when in a time that now seems like another lifetime entirely, I knew that at some point I would need to have my ovaries removed. The oophrectomy, in addition to being an outstanding Scrabble word, was a foregone conclusion. Think about it: ovaries produce estrogen and progesterone, both of which provide the fuel for my kind of cancer. Cut off the fuel supply and starve the cancer and eliminate any hope it may have of coming back.

Simple, right?

Then the post-mastectomy infection reared its ugly, ugly head, and I wasn’t well enough to undergo another surgery for quite a long time. (Some certain people who read this blog don’t like to see mention of said infection, which I totally get, but it’s kinda vital in the chain of events, so let’s all just suck it up and read on; it was a fluke infection for which no one can be held accountable. File that one under “shit happens.”) Moving on….Then once I was well enough after the infection, I was sick to death of sickness and near-deathness, so the idea of another surgery was most unpalatable to me. I wanted and needed — and deserved, dammit — to get back to “normal” for a bit before going under the knife yet again, so the oophrectomy was postponed. But it remained a constant, a “when” not an “if.”

My stint back to “normal” was short-lived, however, because once I was recovered enough from the mess last summer, it became apparent that we needed to go ahead with reconstruction asap in order to give the now-healed chest wall a vascular system. That poor chest wall had sunk and had been sliced & diced & excised enough times that it needed fresh blood as much as Edward Cullen and his crew does. So the next step in the unscripted and not-nearly-as-exciting-but equally-dramatic-as-Eclipse saga that is my life, we commenced with The Big Dig and relocated blood vessels from my belly to my chest. After a long-ass surgery and a Hades-esque stay in ICU, the blood vessels bloomed in their new home and all was well. With my highly skilled and kick-ass surgeons, the Drs S, The Big Dig was a screaming success and I seemed to be on the right track.

Revision #1 in August and Revision #2 last week were successful as well, thanks to the original Dr S, who never ceases to amaze me with his surgical talent and artistry. That man is pure genius in the OR. Can’t recommend his work highly enough.

Having survived all these surgeries brings me to the here & now, which is the pursuit of the oophrectomy. Yesterday’s visit to the OB-GYN was a fact-finding mission for a surgery that I know in my heart of hearts I should have. Then the OB-GYN throws me a nasty curveball by questioning why I want to do this.

“Want” isn’t the word I would use for my feelings toward the oophrectomy, but I understand that it is elective compared to an appendectomy, say. But no, I don’t want to do it. I need to do it, and I’m being responsible by volunteering for it. But I certainly don’t want to do it.

Almost as much as I don’t want to have my carefully-thought-out plan upended. I listened carefully as the OB-GYN explained the permanence of removing one’s ovaries, the risks of the surgery, and the menopause it brings on. I’m there, I get it. I’m young for breast cancer and for removing my lady parts, but I’m way past childbearing and have been in menopause for the last 18 months, so I am well-versed in the hell that it is.

She spent a lot of time explaining that surgical menopause is abrupt and intense. Instead of the body gradually decreasing the amount of female hormones at its own pace, it’s like an on/off switch. One day you’re normal, the next day you’re in menopause. I’m still not sure what part of my 18 months of chemically-induced menopause she didn’t get, but suffice to say it was like banging one’s head against the proverbial wall. Bang! Bang! Bang!

Some days there’s not enough alcohol in the world to cope with these detours and speed bumps on the cancer “journey.”

(Ooooh, I think I feel a tshirt slogan coming on.)

The mess of the OB-GYN appointment continued when she was finally satisfied that she’d drilled the cons of the surgery into my head enough to examine me. She determined right away that doing the oophrectomy laproscopically (i.e., through my belly button instead of via an incision) won’t work because of the abdominal scar from The Big Dig. She thinks there’s too much scar tissue and the skin on my abdomen is too tight to allow her to maneuver laproscopically. This is one opinion, and a perfect example of why a pro-active patient solicits more than one. Nothing about my ab scar is unusual or unexpected, just makes a laparoscopic procedure trickier.

So the option to not doing the surgery laparoscopically is making another incision. She wants to make another incision, below the existing 17-inch racetrack. Another incision.  Now I’m thinking there aren’t enough cuss words to cope with these detours and speed bumps on the cancer “journey.”

(A companion t-shirt, me thinks.)

Ugh.

A most unsatisfying appointment.

There was just enough time for Amy and me to grab lunch before moving on to my next appointment. And yes, by lunch I mean drinks.

My next appointment entailed removing the two sets of stitches from Revision #2, which I expected, instead of removing them with tweezers or little scissors, there was a blade, which I did not expect. The downside to those super-tiny, uber-tidy mucho-skilled plastic surgeon stitches is that they’re a bit harder to remove than conventional, Frankenstein-style stitches. The blade was like an X-acto knife on steroids, and after the day I’d had, it scared me a little bit. But the good doctor held my hand, soothed my jangled nerves, and tut-tutted over me like the kindest of caregivers, and the stitches were no more. You can barely spot where they used to be because the incisions are so small, and the human pincushion lives to see another day.

But what about those ovaries? What to do about those?

The saga continues.


A day of docs

Yesterday was my regular check-up with my onco-crush, Dr D. 

He’s so young and so cute ya just want to squeeze him. And he’s a hugger, too, so squeezing him is definitely an option.  Me, I’m not much of a hugger, as my book club buddy Laura will tell ya. She manages to get more hugs out of me than anyone. I’m not very touchy-feely by nature, but I’m working on it.

I got a couple of hugs from Dr D yesterday, and since I won’t see him again until January, he said Merry Christmas and Happy New Year, too. That makes me panic a little, thinking the holiday madness is upon us and I don’t have enough time to engage in the consumerism that has become de rigueur. I also don’t tend to think that far ahead. I’m more of a small-picture kind of girl who’s learned not to look too far down the road, because there might be something wicked lurking, like a 15mm invasive ductal carcinoma and its nasty friends, DCIS and Paget’s Disease.

Dr D is very big-picture, though, and he’s not at all worried about something wicked lurking down the road. That’s one of the many reasons I like him — every time I see him, he tells me he doesn’t think my cancer is going to come back. That’s music to my ears and a balm for my worried soul. When I told him that I think about recurrence every single day, he tut-tutted and told me to think about something happy instead. Duly noted.

We had a long talk about my love affair with alcohol, as we do at every visit. He knows I’m a fan of the sauce and while he would like to see me cut back because of alcohol being a risk factor for breast cancer, he also advises his patients to live their lives, and he’s realistic about the studies being inconclusive about just how big of a factor alcohol is anyway. I pointed out the tragic and really-not-fair example of Linda McCartney, wife of the famed Beatle, who died from breast cancer even though she was a hard-core vegan, ate 100 percent organic, had no family history of the disease, and never drank. You can’t live much cleaner than that, and the bastard still got her. I’m not vegan, but I am hard-core vegetarian, I eat a lot of organic, I actually like fruits & veg, and had no family history of the bastard disease, so I’m going to enjoy raising a glass here and there. Not every day, like I would like, but that’s my choice. There’s nothing I like more than having a glass of wine while I cook dinner every night. I don’t do that anymore. But I’ll still say cheers to the freaky weekend. And if a certain someone shows up with an unexpected bottle of bubbly because it’s Tuesday, then I say life is for living and pop that cork.

Once we discussed and debated the effect of alcohol on BC patients, we (thankfully) moved on to other topics. He has a very nice bedside manner that involves him spending a good deal of time looking right in his patients’ eyes and asking how the feel. How they are coping. How they are emotionally. He knows that fighting the vicious beast that is cancer is way more than a physical battle, and he spends the time necessary to check on the non-physical battlefield. Smart man. In this process, however, he might have bitten off more than he wanted to chew by asking me if I’m happy with my reconstruction. Cue the $100,000 question.

Do I think my surgeons did a good job with my newly reconstructed chest? Yes. A fantastic job. Does it look 1,000 times better than it did pre-reconstruction? Way. But am I happy? Not so much.

See, we had a conversation very similar to the one last week. And I pointed out to Dr D, as I have to other docs, that I am one of the uncommon BC patients who was happy with her body before cancer ignited a stinking bag of dog-doo on my front porch. Sure there were some things that I wanted to tweak, after having babies, nursing babies, and turning 40, but overall I was happy before. That makes it kinda hard to then be happy with the after side of  multiple surgeries and their far-reaching side-effects. I predicted that long after my “journey” is complete and I go back to my pre-cancer life, I will always see the scars instead of the progress. Not to be a Negative Nellie, mind you, but because I am very realistic. I know that the 17-inch scar on my belly will fade. In fact, it already has, and it started out looking way better than a lot of what I’ve seen in doing my research. I know that the “flaps” of skin used to create my breasts will settle into the landscape of my battle-scarred chest. I suspect that some day I will be more “me” and less “it” when it comes to thinking about how cancer has changed my body. But I’m not there yet, and Dr D listened and counseled me.

He gave me a very good piece of advice. So good that Amy jumped up and wrote it down on a piece of paper towel in the exam room. He said, “Focus your attention on the things you have achieved, because you have achieved a lot, but you still have a ways to go.”

He’s right, of course.

I just don’t tend to think that way. I’m way too busy thinking in the here & now (do I have enough bread to pack the kids’ lunches? Did I move the clothes from the washer to the dryer? It’s Mary’s birthday tomorrow; where’s the card I bought for her 4 months ago?). I need to stop a sec and shift from the here & now and the never-ending “to do” list and think for a moment about how far I’ve come and what I’ve achieved. My “journey” has been far from ordinary, routine. As my nurse-friend Laura says, “Everything that could go wrong did, and you were as far from a textbook case as could be.” True dat.

Two really great things came out of my appointment with Dr D, besides the pep talk and his blessing to have a drink. The first is the end of the Lupron shots. Hooray! I endured a year of that blasted drug, and am thrilled to say adios to it. The needle was huge, the drug was of the ilk that burns like fire upon entering the body, and the side-effects were hideous: hot flashes often enough to power a small city. Sweating more than Leon Lett after his infamous fumble against the Dolphins. Mood swings that make people run and hide from me. Joint pain that sometimes catches my breath. Decreased bone density that I can’t feel but fret about anyway. Bye-bye nastiness. Of course the flip side to being done with Lupron injections for hormone suppression means that I have to get serious about the oophorectomy.  Gotta get those ovaries removed for good. As much as hate the idea of yet another surgery and yet another recovery, I am of the “slash & burn” mentality when it comes to cancer. Get ’em out so they can’t cause any trouble.

Item #2 in the “this is really great department” was the very last port flush. Hooray! I’ve had my port for almost 18 months, and it has served me well. It’s made my life easier and saved my already-floppy veins from being blown out once and for all. It’s allowed me to endure so many needle sticks that a 20-gauger no longer makes my palms sweat. But I won’t miss it. I will happily bid adieu to the titanium disk sewn into my  jugular. I will not miss the monthly flushes with saline and Heparin. I will keep it, though, as a souvenir. As a reminder of all that I’ve achieved. Of all that I’ve endured. Of all the crap that was flung at me but how little of it stuck.

 

 


Journey

If you’re like me, once you read the title of this post, you’d end up with “Don’t Stop Believing” running through your head.

“Hold on to that feeeeeeeeling….”

Yes, we are simple creatures at times, and prone to even simpler suggestion.

As I wrap up the Napa series of blog posts, I reflect back on a fantastic trip, an outstanding weekend, and the kind of memories that would keep me warm on a cold winter’s night if I didn’t live along the Gulf Coast of the great state of Texas. Not that the memories aren’t that good, but that there’s little need for warming around here. Especially with my hot flashes. Thanks, early-induced menopause, because pre-summer in Houston isn’t steamy enough.

Thinking about the trip and preparing to say good-bye to our visitors from Boston today makes me a teensy bit sad. I don’t like transitions. I’m in for the long haul and can work long and hard at a steady pace, but I don’t care for the ups & downs, the twists & turns, the stops & starts. This sentiment applies, for me, whether we’re talking about vacation or illness. Going from my “normal” life to vacation mode takes me a little bit of time. Getting into the vacation frame of mind is a conscious shift for me, even when it’s a vacation I’m looking forward to. Having our friends from Boston here is most definitely something I look forward to, but it still requires me to make that shift in my head.

Now that our vacation with them is ending, I find myself again shifting, from the luxuryof sleeping in on a school day and spending the day by the pool, drinking early and often and into the evening; to hauling my carcass out of bed to pack the kids’ lunches, sign their folders, forge notes about their absences, and getting back to my normal life. I like my normal life, so this isn’t inherently a bad thing; it just required me to shift gears and change my  mind frame.

I’ve never been good at handling change, and that may be why I’m not a great traveler. I don’t like the idea of having to decide in advance what I’ll be wearing, and then pack it, taking care to not forget anything. It seems that once I get used to the new location, it’s about time to go home, and then there’s another adjustment to handle. I do it, and without the need for intervention, but it’s an effort.

That’s why this phrase spoke to me:

It was on the wall of the Cost Plus World Market in San Francisco near our hotel, where we popped into for supplies (and by supplies, yes, I do indeed mean champagne) our first night in California. We were at the checkout, clanking bottles and deciding whether to add chocolates to the purchase, when I saw this saying on the store wall. The other shoppers might have thought me a bit mad to be snapping a photo in the middle of a store, but I stopped caring about things like that a long time ago.

The saying spoke to me because I know that Lao Tzu is right.  He was a mythical figure in ancient China and is said to be the father of Taoism, so you know he’s smart. His ancient quote about the good traveler retains relevance today because people like me continue to buck the journey in favor of the destination. I know that it’s not about the destination, yet I can’t wait to get there. I will jump through all the requisite hoops along the journey in order to get to the destination, but for me, the destination is the goal. Wrong, I know, but still I persist.

Some say that dealing with cancer gives you greater clarity on “the things that really matter.” Or that having survived cancer, you become more aware of and grateful for the things around you. Then there are the idiot-balls who say that cancer is a gift. To them, I say choke off. This is no gift. Yes, it does afford the opportunity to re-evaluate priorities and habits, but it’s no gift.

I spend a lot of time in my personal “cancer journey” marking off time and accumulating milestones. Maybe that’s a coping mechanism, I don’t know. I do know that I can tell you to the day how long I’ve been on oral antibiotics (251 days), and how long it’s been since The Big Dig (49 days). More likely, it’s because I’m focused on the destination and not the journey. I can’t wait to “be done” with this cancer business: the disease itself, the surgeries, the recoveries, the uncertainty, and the drug therapies. I don’t aspire to ever be free of the worry that the cancer business drops on my doorstep like an unexpected and oversized parcel. It will always be there, in the back of my mind. I liken it to the childhood sensation of rolling your tongue through the newly-created hole of a lost tooth. Your brain knows the tooth is gone, but your tongue can’t resist checking for sure, by sliding through that narrow, slippery, and slightly nauseating space. My brain knows my cancer is gone, yet it can’t resist double-checking.

I refuse to live in fear, however. I don’t want to have any regrets: about life in general, and certainly not in this “cancer journey.” Each decision I’ve made along this “journey” has been nitpicked and examined half to death, with risk and reward calculated to within an inch of their lives. Some decisions have been difficult, and some have been easy, but none have come without a lot of thought.

I heard from a fellow breast cancer blogger who is dealing with an infection, possibly of her tissue expander, just as I did. She’s on IV Vancomycin, like I have been many times. I commented on her blog to tell her that the Vanc works and it will cure her, hoping to offer some support. She replied that she can’t imagine how I endured that process multiple times because it’s so stressful. Yes, it is. No doubt there. And if someone were to ask me how I endured it, I don’t know that I would have an answer. I don’t know how I got through it, other than I just did it. Just gritted my teeth, tucked my head and did it. Because I didn’t see any other choice. Saying “I can’t” wasn’t going to make it go away.

I do like to make myself focus on good things, or to “walk on the sunny side of the street” (thanks, Mom!). Yesterday I wasn’t feeling well, for the 3rd day in a row, and was a little put-out that my “cancer journey” was once again interfering in my fun. I wanted to visit and eat & drink with my friends who were in town, but instead I had to lay down and take a nap. Take a nap. In the middle of the day, and in the middle of my friends’ visit. That made me grumpy, and I was just starting to think about getting out the pity-party supplies.

Then I told myself to shut the hell up, get in the shower and get on with the day. There was dinner to prepare for our last night together and 3 bottles of bubbly in the fridge, so there was no time for a pity party.

While in the shower, I was wondering why the hell my belly incision is still so tight and sore after 48 days, and when in the sam hell it’s ever going to heal all the way so I can take a shower like a normal person, without wincing as I lather, rinse & repeat, and just be done with it.

Then I realized: I AM taking a shower like a normal person. There were no JP drains to deal with. There were no holes in the side of my body to keep dry. There was no dressing over the accessed port-a-cath that had to be kept dry. 

When my port is accessed, i.e., has a butterfly needle piercing my skin and the port to deliver medicine, it has to be covered to keep it sterile. The port itself is smaller than a quarter, and the butterfly needle (while really thick) doesn’t extend the area. Yet the whole thing has to be covered with this giant dressing. That’s it above, stuck to my clavicle, shoulder, and neck area. My skin hates these dressing with a passion. The sticky tape irritates my skin as much as Sarah Palin irritates me. After I peel the dressing off, there remains a red, raised outline in the exact size & shape of the dressing.

And yet, I’m sans dressing. That’s a bright side, a good thing to be tallied and counted. I’m also sans sling bag. Not having the JP drains means I don’t have to wear the sling bag, cute as it may be, 24/7. That’s another bright side, and a very good thing.

Yep, it’s cute, and it served a wonderful purpose, and I love my runnin’ buddy for getting it for me. Being able to camouflage the drains by stuffing them in the sling bag, then hide the protruding rubber tubing by the cross-body bag, gave me freedom and kept me from being house-bound.

There’s nothing in there — look, Ma, no drains!! — and that is a reason to celebrate. I’m no longer tethered to plastic bomb-shaped udders collecting all manner of gross stuff, fluid and solid, that my battered body is shedding after yet another major trauma. I don’t have to plan my very limited wardrobe around the bright orange pattern anymore, but now I can do that just because I want to.

I will always be grateful to the sling bag for carrying my drains, and my drugs, in such style. The clear plastic compartment in the inside front is not likely designed for slipping in the essential few pills, but it sure worked well for me. I’ve heard that some people keep their driver’s license there instead. How weird is that?! Instead of my TX ID, featured here are my constant companions Bactrim & Minocycline, the antibiotics for the post-mastectomy infection; a muscle relaxer for the super-tight 17-inch belly incision; and a Xanax for any and all calamities, just in case.

So while this “cancer journey” is far from a gift and certainly does suck, I can still “walk on the sunny side of the street,” look on the bright side, and find moments of goodness contained within as I move forward, always searching for the finish line.

This signpost, sent to me by Jill in the Oakland airport en route from Napa back home, is a good mile marker in my journey. I love that my friends see bubbly-related things and think of me, and I love that no matter where this journey takes me, I’ll have great friends, a sassy sling bag, and plenty of bubbly for the ride.